This poem was written by Mrs. Jackie McCombs. She had written it in the
memory of her husband Henry who suffered from RSD.
RSD? What does it mean?
It causes so much pain I would like to scream.
You wake in the morning and all the day thru.
It’s constant, constant pain and nothing you can do.
In later stages…they say there is no cure.
We Pray they find one. That’s for sure!
It’s hard to deal with all that goes on.
Being in pain from dusk ‘til dawn.
Anger, depression, mood swings, I could go on and on.
Then some doctors think. It’s all a Con.
Drugs, drugs and more drugs …you must take.
Starting from the moment, we awake. No one really understands what we have.
Too bad there’s not a magic salve.
So to all of you, who know how I feel, The ones who KNOW the Pain is real.
We’ll stick together through thick and thin.
Hopefully someday in the end we will win.
Guess we just have to wait and see and pray they find a CURE for YOU and ME!
It’s not in our heads. The Pain is there.
Please Doc, show consideration, show YOU care.
Until there’s a cure, we all must cope.
So DOCTORS….PLEASE LISTEN TO US, IT'S NOT FOR THE DOPE!!!!!
I hope you who read this know that I will keep you in my prayers. My Husband
was a wonderful man who passed away Sept 15th 2001 from bladder cancer. I
wrote this after visiting a doctor who acted like his pain was imaginary, I was so
angry that I just put what I felt on paper. This is in Memory of Henry McCombs.
My wonderful husband who was the greatest thing that ever happened to me. We
have 3 sons who have also suffered because of this horrible disease. But they have
all stood behind me and have stepped in to help their Mom. Take care all . GOD
BLESS YOU.
If you would care to write to me please do. Please just put RSD in the subject
box. jmccombs26@aol.com
I WOULD REALLY LIKE TO GIVE THANKS TO ERIC FOR THE WORK HE
DOES AND FOR THE OPPORTUNITY TO HIM TO SHARE MY POEM ON HIS
WEB SITE. THANK YOU ERIC. MAY GOD BLESS YOU AND KEEP YOU WELL!
Jackie McCombs
This poem was written by Heather Quinn. Heather is an RSD Patient.
Dear Family:
I’ve cut my losses and the ties; for this is the end of those of you that don’t
understand.
This pain and heartache that it’s given to me is the path to the rest of my
recovery.
There is nothing left to say or do, but take the next step.
Don’t talk to me, call me or look my way.
I’m as invisible to you as you are to me everyday.
As the world turns, I suffer.
Suffering equals my darkness and despair.
No ending and no beginning.
There I am stuck in the middle.
You’ll never see my pain.
You’ll never see my suffering.
I feel like I’m dying.
I feel like there is no reason to breathe.
There is no reason to love you.
There is no reason to think of you.
There is no reason to act or react.
Why for all that brings is heartache.
The world continues to turn as I suffer in my darkness and despair.
I see no ending, no light, but a new beginning.
I’m in the middle.
Sadness, anger, betrayal, loneliness and emptiness are how I feel.
Pain, hurt and sorrow is how I deal.
You’ll never see my pain and suffering.
All dreams, plans and hopes are gone in the blink of an eye.
Now that I’m alone, you’ll never see me cry.
I’m hurting so much and deep that I cannot sleep.
Lying there in bed, gazing into the air, wondering will I ever heal?
Free me, please free me from this pain.
Free me to know that I will never hurt again.
Free me to be myself and never lose site of that.
I’m important.
Me, me, and me, that’s all I want to see.
No one else matters to me, accept those that understand my disease.
To accomplish this, I’m forced to keep my heart under lock and key.
If you like you to contact Heather the author of this poem you can e-mail her
at: hz712002@aol.com
This poem was written by T.L. Tobac. T.L. is an RSD Patient.
ROLLER COASTER - RSD
Oh twisted roller coaster
I have been propelled
to live upon
destined to this
contorted fate
not of my own volition
nor deservedly
no fun ride
this roller coaster RSD
Reflex
attacking at will
deceiving my psyche
into thinking
though drug induced
recovery may dwell upon the horizon
and that one day
we will stop at the station
where I will depart
at last
to grab my shiny prize...
remission
Sympathetic
chugging chain
to the crest
the sound tortures my brain
as it abandons me
on the opposite side
to another day of pain
Dystrophy
Destined to remain
forever strapped
to this wicked ride
praying for
moments of peace
I am
a prisoner
of it's clutches
comfort may
come at any time
and just as quickly fade
to be replaced
by searing pain
spreading
and flashes of insane heat
damp sweat
spasms
leg burning
arms aching
and yet it starts again
could it be at last?
this time on the
up side of the
Roller Coaster RSD
Reflex
sunny day
happy ride
pain subside
drugs are working
just for today
I anticipate a visit with
my former self
(the one who doesn't ride the coaster)
Sympathetic
hope wells up within
this is it (excitedly)
could healing come at last?
Does the shiny prize (remission)
at last arrive into
my hand?
Dystrophy
dash it all to hell
the chugging chain begins
back at the wretched drop point
for that fleeting moment
I thought I held the prize
but alas my palm lay empty
for this ride RSD never ends
hope ever remaining
some shiny dangling object
whizzing by it with each lap
teasing me
well out of reach
passing it over and over
with each twist and spiral
of the Roller Coaster
God
if this be your will
that I am destined to ride
I know you will be at my side
and one day I pray
You will take me to the station.
T.L. Tobac
5/4/07
This poem was written by Darlene Brownell. Darlene is an RSD Patient.
Who Am I
You can’t see me, you can’t hear me. I'm the one inside of you, making you go crazy. All
the doctors you have seen, they still don't know me, that's funny to me. And it’s been
over 100 years. And they still can’t find me, those tests they take and pictures, there just
wasting there time. I told you before they won’t find me no matter how hard they try.
Indeed I'm the one that makes you hurt all day long. I am the one responsible for your
terrible burning pain. I love burning you with my flames, keep complaining no one hears
you, no one cares. They can’t see me they cant feel me. I'm the only one who knows what
you’re feeling because your body belongs to me now, and I have the power to make your
pain spread. So don't try to stop me, because you no what they will say, it’s all in your
head and how many pain meds have you taken today. Wow! There still saying that now,
that’s insane. I will leave you with nothing, no family and friends. I will keep torturing
each and ever day till the bitter end because people can’t see your pain and that makes
my day. I’m going to take my flames and burn you in the worse possible way, I enjoy
those shooting pains I give you threw out the day. HA- HA don't you wish you were
dead, because that's my intent. If your doctor keeps giving you those meds it’s going to
affect you and mess with your head. That's ok he’s doing my job, the more suffering you
have makes me want to stay. I’m not leaving so stop praying; wipe your tears this
nightmare is just beginning. Yes your really are a wake, I find that quite funny you
thought it was a dream, It sucks to be you since no one understands. So do me a favor and
do yourself in. Ok, I will tell you who and what I am. My name is called RSD isn't that a
nice name. It stands for Rapid Spreading Disease. So tell that to all the morons you see.
And maybe one day they will try and stop me. Bye the way would you please stop
changing my name.
If you like you to contact Darlene the author of this poem you can e-mail her
at: darlenebrownell@yahoo.com
This poem was written by Cynthia Ward. Cynthia is an RSD Patient.
I’m Not Like You
© 2000 ® By: Cynthia E. Ward
I’m not like you – you see;
I have a debilitating disorder
Called Reflex-Sympathetic-Dystrophy.
My days are precious and few;
If only I could do the things I used to do!
Although, I’m enthusiastic and optimistic my body is in constant pain;
Though I strive to find the best in me only fond memories remain.
Though each day is a struggle
I don’t want to be classified as a casualty or a statistic
Because I think of myself as a survivor with a name.
Somewhere out there is a person like meWho is in constant pain or feels the same.
You are similar to me, but as of yet I don’t know your name.
Although, I have a disability – I still have responsibilities.
Though I’m different I have needs just like you,
And I would like the opportunity to do the things you do.
Opportunities like being able to work and enjoy my leisure time;
Without total disregard,
Because even though I strive for excellence getting there is very hard.
Living with RSD is challenging everyday
So this is why I think the public
Should listen to what I have to say.
RSD is permanent damage to muscles bones and nerves;
Which drastically changes our lives.
We are special people who have had to endure unnecessary pain and strife.
There are no definite cures for RSD so we suffer everyday;
Hopefully doctors will understand and find a way
To end the pain so the best part of our lives will return;
So everyone educate yourselves so you can learn.
We will learn that everyone is valuable in their own special way;
Please listen to what I have to say!
I am a person with a heart, mind, and soul,
And Reflex-Sympathetic-Dystrophy.
If you give me the opportunity- I can be the best that I can be.
There will be many times which are very trying,
And even times when you feel like cryingSo it’s best to concentrate on the things you can do instead of the things you can’t
Or are unable to do, because this will get you through.
I’m not like you- you see, because I’m just me!
Though, I have a debilitating disorder called Reflex-Sympathetic-Dystrophy.
Remember, I want the opportunities and privileges to do the things you do.
Though, I look similar –I’m not like you!
This poem was written by Christina Nowak. Christina is an RSD Patient.
Refuse to Sanction Defeat
You toss and turn
Clenching your eyes
You bite your lip
To hold back the cries.
However you lay,
There is no relief.
The aching pain
Leads you to grief.
You curl your fingers
To form a fist,
But they barely bend,
They seem to resist.
You curse and you pray.
The cold creeps in.
The totality of pain
Did not yet begin.
Like a slave to his master,
You bend at its will.
Food is forbidden,
You mustn’t be still.
Fighting the battle
Each day and night,
Yet when people are near
You better act right.
Hold back the pain
Flash a fake smile
Pretend you are normal
At least for awhile